Although it was mentioned in a press release in June 2011, I learned only recently while watching a TV show that Glen Campbell is suffering from Alzheimer's disease. Campbell is an award winning Country/Pop performer who has enjoyed an enviable career with a string of hits and guest performances on albums by top selling artists like Frank Sinatra, the Monkees and the Beach Boys to name just a few, plus he was the star of his own music variety show in the 1970's. Accomplishments aside, it is the human story here which caught my attention. We sometimes forget that the very famous are also flesh and blood humans like the rest of us. They have families who care about them, and problems which are common to many of us.
Despite his diagnoses of Alzheimer's, Campbell is doing one final tour for his fans. This is a task that likely would not be possible if not for the fact that he is joined by his three youngest children. His daughter Ashley (pictured) stands next to him on stage with her banjo and admits that when he feels insecure, as people with Alzheimer's often do, she is there to reassure him. Also in the band are his two sons Cal and Shannon.
During an interview on the Sunday Morning Show, his wife Kim (left) would gently remind him that he had the disease. If you didn't see the segment, it went something like this: "Alzheimer's," said Kim. "You think we got that?" asked Glen. You do." I do?" Uh huh." I don't feel it anywhere," he said. "Where do I - what do I do? Like, what?" "You forget things." "Oh, of course. I've done that all my life!" he laughed. "I'm forgetful." The entire exchange was enough to bring tears to my eyes. I've lived what they are going through; 3 times now. Most recently with my Aunt, but before that with my Grandmother and my Father-In-Law.
With baby boomers reaching retirement age, memory loss is becoming a silent epidemic. Families everywhere are just learning to cope with the slow, undignified and exhausting symptoms of Alzheimer's and similar memory robbing diseases. For the purposes of support, the word "Alzheimer's" is always used but it often refers to other short term memory loss conditions as well. While my Grandmother had Alzheimer's, my Father-In-Law had Vascular Dementia, a condition where a series of small strokes damages the brain, while my Aunt had something called "Lewy Body Disease." This is a condition that takes not just the memory but causes shaking like Parkinson's. No matter which form of short term memory loss your loved one has, it is a degrading and dreadful way to spend your so-called "golden years".
The first warning signs are small. I can remember when we first began to notice that there was something not quite right with my husband's father. Alex Lazaroff had been a brilliant drummer. His skills were admired and sought after by some of the biggest names in the Canadian Industry - and beyond. At the age of 71 he had a heart attack and after what seemed like a slower than expected recovery, he began to show signs of memory loss. It was small things at first. His house was not as tidy as usual. We just thought it was because he still felt poorly. He stopped eating well. We would learn later that he would be absent from gigs, or get lost trying to find them. His band mates did their best to cope with the challenges but as his playing and reliability deteriorated, so too did the calls for work.
Alex began to engage in ritualistic behaviours; visiting the same mall every day to buy a muffin and coffee from the same fast food outlet, then a taco from another. Hardly a healthy meal for a man recovering from heart disease. He didn't talk as much as before and sometimes struggled to come up with common words. But it was when he lost his car inside a downtown parking garage that we began to wonder if something more was wrong. We asked him to get a check-up.
My husband Rick dutifully made appointments with various health professionals and then made the drive to the city to make sure he didn't miss them. We learned he had Vascular Dementia and the prognosis was poor. The doctor told us these patients typically survive about five years after the first signs and that it would get much worse. How does one prepare for something like this? You can't just take away a person's independence, their car keys, control of their bank account. Our laws don't allow well meaning family members to just assume control. It wouldn't be until a crisis happened that we would be able to step in to do something.
For Alex, the crisis happened one day when his youngest son found him unresponsive in the bathtub. He called 911. This was the beginning of a health nightmare as it required a 3 month stay in the hospital which included a barrage of invasive tests. Alex's memory short term memory was shot, he experienced hallucinations, refused to eat, needed a caregiver to sit 24/7 with him so he wouldn't remove his IV and we thought we were looking at the last days of his life. He was released to his son frail and emaciated with the expectation that he would die in the care of his family within days or weeks. Although he refused to eat, the one thing he would do was take his pills so we devised a plan to feed him M&M's along with a Dixie cup full of Ensure (a meal replacement milkshake) as often as we could. It worked! When his weight started to stabilize, his appetite returned. We began to feed him soft foods, then moved to regular meals.
At about the same time, my Grandmother who was in her late 90's was starting to show signs of decline. She lived on the 10th floor of a Toronto condo which had a view overlooking lake Ontario. My Aunt Sally was there to watch over her which was a relief to family members, but we would learn later that she too was already developing symptoms of memory loss.
Sometimes family members are not aware of a problem until a medical event happens. In this case my Grandmother took a nasty fall in her bedroom. She was taken to hospital where they began to look for medical reasons for her fall. She did not gain full consciousness for a while and in her delirious state she would call out for her sister Miriam, who had been dead for 50 years. We learned that it was common for people with memory loss to have strong memories of things that are decades old, but very little memory of recent events.
When she was finally able to return to their condo, the real work began. My Aunt, already in her 70's took on the task of caring for her Mother. Family members begged her to get more help, or consider the idea of assisted living but she would hear none of it. As I was already dealing with my Father-In-Law with vascular dementia, I was well aware of what was in store for Sally. I was half her age and already feeling the strain of being a caregiver - and I had my husband there to help!
The only help my Aunt would accept was from my Mother, a close friend, or myself. This is a highly ill-advised route for anyone to take when they are caring with a dementia patient because burnout can come quickly and cause the caregiver to become more ill than the patient. My Mother would go up to visit to try to help out, as would I, and a few trusted family friends, but this type of illness needs a whole lot more support than what we could deliver.
My Grandmother would live with the illness for about 3 years before dying at the Riverdale Hospital in Toronto. The entire time my Aunt cared for her until she was unable to walk on her own. Since none of us were strong enough to lift her, she spent her last couple of weeks in a chronic care facility before being moved to the Riverdale Hospital. I visited her on her last day. She was still calling for her sister Miriam. Dehydrated and emaciated, she succumbed to her illness later that evening.
The Melt-Down Period
Alex lived in our home for almost 3 years. It was a difficult time for both me and my husband. We were exhausted! We were no longer able to do anything together as someone had to be home at all times. Our home was turned into a lock-down. We had locks on the inside of our doors so that Alex would not go missing. He had done it once or twice before and was returned to us by Police who seemed impatient about his getting out. The coded locks seemed a good idea as even if we told Alex what the code was, it would be forgotten immediately. However, as his behaviour changed, so too did his paranoia. He was unhappy. We wondered if we were doing the right thing having him in our home but the alternative; housing him with strangers in a locked-down facility seemed wrong.
Alex liked to go out for walks but without help, he could never find his way back. He had no concept of weather so it was important to make sure he was dressed properly although we could not make him part with the sweater, even on hot days.
It was during the winter, on one particular cold and gloomy day he decided he wanted to get out for a walk. I was alone with him and needed to get my work done first so I asked him if he could wait till Rick got home? Usually he was okay with that and would wait but on this particular day he was more agitated.
Ironically, we had noticed some alarming new symptoms and discussed the idea that it was now time to consider professional help in the form of some sort of a long term assisted living facility. On this very day I had asked my husband to go visit a couple of these facilities to see which one appealed to him most, or more accurately - didn't feel so sad. We wanted to make sure he was going to get the best care he could afford. However, this would turn out to be one of the most traumatic and difficult days with this disease. This man who was warm, lovable, and would never hurt a fly began to become manic. He had not slept for days (which meant we too had very little sleep). He wanted to go out for that walk and became agitated when I told him that I needed Rick's help to walk him. He was angry but he seemed to calm down. Little did I know that when I went back to work, this frail 76 year old man with severe memory impairment had devised a plan to exit through the back door and jump over the 5' high fence. There was snow and ice on the ground and he was not dressed appropriately for being outside.
Until this day we had a system which had been working well for us. In the summer, our neighbours for several blocks were all aware of who he was and what his condition was. They would gently guide him back home again if he seemed lost. But this was winter and in Wasaga Beach, most of the cottages are closed up for the season. A walk required my direct attention - or the attention of his son. I looked up to see him outside on the street wearing nothing more than one shoe, track pants and a light sweatshirt. I bolted outside to try to talk him back inside but he raised his fist to hit me and told me to leave him alone. I ran back into the house to phone 911 and watched as he stopped all traffic on the main road and then headed towards the highway. I was sure he would be hit. My frantic voice on the 911 call was probably difficult to understand but to the credit of Police, Fire and Ambulance services, they found him within minutes, wandering on the highway.
One of the most frustrating things about being a caregiver is that when the police picked him up, he detailed how he had become a prisoner in our home and wanted to be brought back to his own home on Sumach Street in Toronto. The police officer came to my home to pick me up and I got in his car. He began to grill me about why I was keeping this man against his will? Distraught and sobbing still from the trauma of the event, I told him about my father-in-law's dementia and asked him if he questioned Alex about where he wanted to go? He said "yes, 134 Sumach Street in Toronto - I was assigned to that area when I worked in Toronto." I answered that he should know then that 134 Sumach Street was demolished 50 years ago to make way for the Regent Park Development. It wasn't enough that we were burning out from the task of dealing with this illness but we were feeling victimized by people who should have some education in these matters.
That evening the Collingwood hospital wanted us to come and watch Alex because they were not staffed well enough to deal with his wandering but we refused. We had been warned that if we took responsibility for him at this time, our chances for real help would disappear. He had been on a waiting list for a chronic care facility but this event moved his case to the top of the list. Within days, he moved into Sunset Village in Collingwood, On - close enough that his son could visit several times a week.
The first indication of a problem in my Aunt's case came the day we buried my Grandmother. My Aunt who was an intensely private person all of a sudden began to talk to anyone who would listen about sensitive details of her life. Out of respect for her I will not discuss what those details were but on the day of my Grandmother's funeral she spoke with old friends and acquaintances about deeply personal issues. It was odd and we wondered why the sudden change in her personality? It would start to become clear soon after.
The weirdness of memory loss started to show quickly. Sally, a nickname we called her for as long as I can remember, would stop cold in the middle of a busy street and begin to root through her pockets looking for who knows what? I called out to her to hurry across but she became agitated and told me to stop bossing her around. You had two choices now; take your life into your hands and try to stop traffic until she became aware enough to cross the street, or cover your eyes to avoid having to see the result of this particular odd behaviour. The scary thing is that she still had a licence to drive. She had stopped understanding what red, yellow and green lights were for, yet she would get in her car and merge into traffic with other drivers.
In my Aunt's case she had some awareness that something wasn't right. She would say things like "I'm forgetting things and it worries me." I would be called to her condo to fix her TV or Computer when all that was wrong with them is she had forgotten how to turn them on. A TV has to be set to channel 3 for the cable to work but she would routinely walk over to it and change the channel instead of using the remote control. It would result in some very heated and frustrating calls to Bell Customer service who's support people would try to talk her through getting it all working again; an exercise in futility.
Sally began to be victimized by bogus charities. She was clearly on some sort of a list and the phone rang constantly with people looking for money for this or that cause. She once remarked that trying to write all these cheques was a full time job.
It was clear she needed help but she was always reluctant to accept it from anyone except my Mother or myself. I would come by and do some deep cleaning; the oven, the cupboards, tubs and sinks. Mom would be there to deal with the daily tasks. It was exhausting for my Mom and I was now starting to worry about her health if she had to continue supporting my Aunt this way. We began to try to convince Sally that assisted living might be a good idea. We brought home brochures which showed clean living conditions, her own spacious room, 3 meals a day, regular entertainment. Her friends, and she had many good ones, were also concerned enough to make the same suggestions.
Sally voluntarily sold her car after an incident in which she broke a few traffic rules (the details are unclear) and was chased by police. She did not notice things like red lights any more and she certainly did not see the police lights in her rear view mirror. Sadly, the police officer did not recognize that she was a woman with a serious illness and he berated her terribly. What she needed was hospitalization but instead she received humiliation. We were all relieved when we learned that she sold her car, but now it meant that her family had to be there to support her even more.
Without her car, my Aunt would still try to take the bus. Sometimes she would manage just fine but as the disease progressed, she would do things like show up in Wasaga Beach days before she was supposed to be here. I had asked her to come for a visit on a particular date but got a call from her asking why I wasn't there to pick her up at the bus stop? She would not accept my answer that she was three days early and did not think it was at all weird that she began this trip by being at the Bay Street Terminal more than three hours before her bus was scheduled to leave. That was her last trip to Wasaga Beach, although it was one where I was able to make life for her just a little better. I took her to see some jazz, we went out for lunch and took some walks in the sunshine. Sadly, her days of independent living were coming to an end. For her the disease came on quickly. With our previous experience with dementia, her rapid decline was difficult and alarming to witness.
In a surprising move, Aunt Sally decided on her own to move to Chester Village, an assisted living facility on Midland Ave., in Toronto. It was difficult for her to adjust but before the disease took the rest of her memory, her voice and her mobility, she developed friendships that she would not have made from her condo.
As my Mother and I sat with her on her last day, other residents and caregivers would come in and sit with us. They told us about stories Sally had told them. The most surprising thing was that these were true stories; not the fantasies which are often associated with Alzheimer's. I guess she would float in and out of reality and have periods of lucidity where she could remember real facts of her life.
As grotesque as it is to watch the life drain out of your most beloved family members, I am grateful that my Mother and I were able to be there with Sally that day. We sat beside her, held her hand, told her it was okay to leave. We talked about fun times we had, visits to the cottage at Lake Rosseau. We even sang her some verses from her favourite singer; Willie Nelson. She didn't die alone or unloved. My brother Sean and his girlfriend arrived in time to say good-bye as well. I know that this is exactly as Sally would have wanted it. She was extremely loyal to her family and she never ever turned her back on any of us.
It is impossible to document in one article all of the strange behaviour that arises when someone has memory impairment. When it is depicted on TV, it is treated as a punchline. It's not funny, not even a little bit. For the family members who watch the decline, or are in a position where they are trying to care for these people, it is tragic. I recognized the thousand yard stare in Glen Campbell's eyes. I could also see that his wife and daughter who were interviewed for the TV segment were putting on their brave faces to assure fans that he was in good hands. The pain and worry is evident for those who have been there.
Word to the wise; there are many Government assisted support services available that can help to lessen the load. Everything from home visits to aid with bathing, to people who will help with cutting brittle nails, or sit with the patient while you take a much needed break to see a movie or just to go for a walk. If you ever find yourself in a position of being a caregiver to a person with memory loss, find out what help is available in your area.
- Contact the Community Care Access Centre: http://www.ccac-ont.ca/
- This is a page with contact info for the Altzheimer's Society of Greater Simcoe County: http://centraleastontario.cioc.ca/record/BAR0386
- We received a good deal of help from the VON Day Services in Collingwood: http://www.von.ca/en/NationalDirectory/branch.aspx?BranchId=41
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